Thursday, February 06, 2014

Why I don't answer The Question

During one recent week, I was heartened to read three different articles by disabled people writing about disability in a mainstream context. Woohoo! Or woohooish. Each one began with two or three paragraphs dedicated to answering The Question. One was an article about being asked The Question, and how infuriating that is, yet the author still made sure she had answered it before she made her case.

The question is

What's wrong with you?

or sometimes, What's your condition? What's that scar from? What's wrong with your legs? Why do you use a cane? Why are you in a wheelchair? Why don't you have a job? and many variations on the theme.

I don't answer this question, not unless I have to or on the very very rare occasion I am asked by an established friend. Here's why:

It's a personal question, it may not have an answer and it tells you very little about me.

The Question is about my medical history, my body, my physical and mental health. For some disabled people, the answer may involve trauma, violence, shame, personal tragedy - it could be a fresh tragedy or it could be something someone's worked hard to leave in the past. It could involve deeply personal matters such as infertility or a dramatically shortened life expectancy. There may not even be a medical diagnosis - those things can take years, diagnoses can be revised two or three times and sometimes, someone has a combination of symptoms which medical science is yet to stick a name on.

The Question is not relevant.When disabled people point out that their medical conditions are nobody's business, there are usually three objections from our interrogators:

1: "People are just being friendly."

No, they're not. Sometimes social interaction is hard, but do unto other as you would be done to is fairly basic. If you wouldn't like to be asked a personal question relating to your appearance, your own or your family's medical history, don't ask one.

2: "It is our business! People like me let you park in convenient parking spaces and pay taxes so you can have grab-rails in your bathroom, so we should have the right to interrogate you until we're satisfied you really deserve it."

There is a tremendous sense that disabled people are public property - something that's massively increased, along with full-on hate crime, in the last few years. This is such a bizarre reduction of how society works, akin to my demanding of random children I meet that they tell me (a) how they're doing at school, honestly and (b) what they intend to do when they grow up. After all, I let children exist, my taxes go on everything from maternity care to subsidised school dinners. I pay for the little buggers' crayons, for crying out loud!

3: "It is our business! If you have access needs, then I want to decide what you need or don't need based on a medical diagnosis I've never heard of before, rather than listening to your requests."

There's little my diagnoses - or any diagnosis - could tell a lay person about actual limitation and access needs. With chronic illness especially (though with many other impairments too) there is so much variation between individuals, the different symptoms we have and their severity, to say nothing of how these things shift over time, sometimes from one day to the next. The main reason for demanding such background information is personal curiosity. Or you know, nosiness.

Here are some similar Questions.

"Where do you come from?"
"Have you ever tried having sex with a man?"
"So, what gender were you born as?"
"When did you decide that you were that way?"

All these questions amount to the same thing: "I'm normal. You're different. Justify yourself!"

I think disabled people are much more likely to answer this question - not because we are most oppressed, but because of the nature of that oppression. I don't see anyone explaining where they or their antecedents came from before discussing the black experience of university life. I don't see anyone talking about how many girlfriends and boyfriends they've had before discussing queer representation in film.

So why do disabled people feel the need to justify our difference before we even begin to speak about anything that affects disabled people?

Some people are happy to answer The Question for good reasons.

Some disabled people don't find it rude. Some people are very open about their conditions and tell people up-front, before the question is asked. Some people have really interesting conditions. Others have conditions they really want to talk about - I had a phase of this myself in the months following diagnosis. Some conditions are better known, easier to explain and be clear about (although I know at least one person who cheerfully informs strangers of his personality disorder diagnosis - I don't know if that's brave or naive). Some people strongly identify with other people in the same boat and have condition-specific pride; deaf pride, autistic pride, etc..

All this is cool. Absolutely cool. But there are less cool reasons people answer The Question:

Some people believe the answer to The Question is the most interesting thing about them.

Our conditions are often what people talk about when talking about us; we become Bipolar Charlie or Nadia, who has MS *. Often, it can feel that a medical condition has replaced an education or career in terms of what a person does with their day. I'm fairly sure that, when my mother talks about her daughters, she talks about her eldest who is a teacher and her youngest who can't work because she has the Dreaded Lurgy - although she will then go on to talk about what I actually do with my time. One day I will persuade her to skip the Dreaded Lurgy bit altogether.

People join illness-specific support groups which, given enough isolation, can emphasise this idea of a diagnosis as a fundamental difference between ourselves and the rest of the world; something other people don't and won't understand. We spend a lot of time with doctors, in hospitals, filling out forms, administering treatment and then simply being ill (a terrifically time-consuming business). So there are periods - sometimes years - when illness is a huge part of what we think about, as opposed to something we unconsciously work around. Thus, I think there are circumstances where the close psychological identity with a medical diagnosis is inevitable. It's just a shame that happens.

* I took a break from writing this post to read an article someone had recommended. It is in several parts but the first consists of several paragraphs about two disabled people affected by the benefits cuts. It does mention a few facts about their lives and interests, but most of the wordage was taken up with an explanation of their medical conditions and symptoms. The second half of the article opens

"Too often, the disabled are referred to as whatever illness they have, rather than as who they are."

Well, yeah.

Some people answer The Question because they think they need to justify themselves.

Disabled people do have to answer The Question on a fairly regular basis. Need medical help, certain kinds of assistance or accommodation, grants, benefits, protection from discrimination within a workplace, then there's often an insistence on answering The Question, whether or not it's entirely pertinent in the circumstances. Not just The Question, but often other questions about what a dreadful complex range of life-limiting impairments we have. And we live in the knowledge that these questions might not be enough - that while we're dealing with things that we're entitled to, rights protected by law, there's still a strong sense that we're begging to be considered deserving enough.

Disabled people are often made to feel like we are a burden on others, that we exist only thanks to the kindness and compassion of non-disabled people. So when a stranger asks, it can be easy to slip into answering mode - supplication mode - as if this conversation is just another loop we need to jump through in order to get on with our lives in peace.

Of course, there's no reason for any disabled person to be looked down upon, treated like an idiot, doubted or dismissed. We don't solve that sort of thing by making sure that bigots know that we, as individuals, don't deserve this. Nobody, anywhere, deserves that.

Some people answer The Question because of Awareness

We can change the world by telling our stories. Tell your stories! However, we live in a culture where Awareness - a word which is mostly used to increase the profiles of charities, provide cheap and tragic human interest stories for the news media and make ordinary, well-meaning people feel like they are making a difference - is seen as a straightforward, unquestionable good.

Information about a person does not equate to respect for them, especially when

It's the first piece of verbal information a person has about them and

Our cultural responses to disability tend to range across sympathy, suspicion and fear.

The fact that someone who hardly knows me is asking this personal question suggests that their respect for me is already in doubt. I'm not going to increase their awareness by giving a clear and comprehensive answer. I am only going to confirm their privilege.

(Another day, if you're good, you'll get an epic rant on Why Awareness Campaigns Do Far More Harm Than Good To Folks Affected By An Issue Whilst Making Other People Feel Better).

This can be heart-sinking stuff, the point where you're suddenly being told that your doctors are mistaken, you can't have the condition you've been told you have and what you have could be cured with homeopathy. Or the conversation can descend into an interrogation about your medical history, tests carried out, treatments received and so forth. And here's this person, who hardly knew you a few minutes ago, and now they know all about one small but deeply personal aspect of your life and nothing about who you are.

This is not going to be the beginning of a beautiful friendship.

Most people don't ask The Question.
They really don't. It's not normal. It's a power thing*. Not an evil sadistic power thing, but one that goes,

Here is a rare opportunity where I'm allowed to ask a really personal question to a stranger and pretend it's because I care or somehow need to know for their own good. Let's go for it!

The more confident I have become, the less I am asked. I am more likely to be asked while in certain company; around people who respect me completely, and don't make any issue of my impairments or access needs, other people won't ask.

This is no advice for people who don't want to be asked - I think younger people (like under 25) get it worse than anybody, anyway - but it proves the point; this is a power game, microscopic and unthinking, but it is perfectly okay not to play along.

* Children ask but they have different expectations - what they really want to know tends to be, for example, why anybody might use a wheelchair. They don't want to hear about diseases. They ask "Why are you sitting in that chair?" and consider "Because my legs don't work very well." a sufficient and informative answer. Coincidentally, it's the same answer I give the grown-ups.

Thanks for writing this. I've always felt that asking "The Question" was terribly rude and inappropriate (I'm not disabled myself), but whenever I've challenged anyone about it I haven't been able to articulate why. Now I can. Gill x

Just want to note that I am also on/off working on a "Why Awareness Raising is Often Spectacularly Unhelpful" blog post because people insisting on knowing lots of "facts" about my illnesses and disabilities that have *nothing to do with what I need to access something right now* before they'll consider offering the help I need is a pet peeve of mine.

I worked with a guy in a wheelchair at a fitness company. I never asked him what happened. It never crossedy mind to ask. We worked together for 3 yrs. i guess my parents raised me right. I have cervical systonis and I despise being asked I think its rude